Monthly Archives: December 2015

Yesterday, I went to eat with my daughter (Charis) and my husband (Tim) to one of my favorite restaurants, BJ’s Brewhouse in Chandler, AZ. This restaurant has wonderful gluten-free options – most especially a gluten-free pizookie (although I should’ve gotten the mini-pizookie)! I usually have dessert as my appetizer, so I love eating here!

I have Celiac’s disease, so when I go to a restaurant, I generally research it first. Then when I order, I explain to the waitstaff that I am one of those people who is actually allergic to gluten, so I have to be incredibly careful.

I learned I had Celiac’s only about year ago. I know – how could someone miss that? Well, all the symptoms were disguised by all of my other disorders – Lupus, Sjogrens, Fibro, blah blah blah. But since I have gone strictly GF, I have noticed a serious change (I need to go Paleo …which I tried… but more about that later).

Yesterday, I started with the GF pizookie, then followed with broccoli cheese soup and cheddar mashed potatoes. I must’ve had low blood sugar, because I was ordering all the carb/sugar comfort foods. About halfway through the soup, my brain drained. I mean, it was like watching a tub drain, I just melted away. I started yawning, not the nice polite yawns, but those yawns that you can’t open your mouth wide enough or yawn long enough to help. My head started dropping; I could not get my eyes to stay open.

I’ve done this twice before over the past year and we were able to immediately identify a cross-contamination with gluten. So….it’s a gluten reaction for me.

We asked the waitress if it was possible that the pizookie was not GF. She said no, they come packaged separately, and they are in black dishes, while the regular ones are in silver dishes. We asked about the soup and the mashed potatoes (because I had switched to them meanwhile) and explained that I only do this with gluten. She was very concerned and went to get the manager, Kevin.

Kevin was everything one could hope for in a manager. He explained how they are very careful to swap gloves, handle food completely separate, etc. He apologized profusely. And yes, he could tell there were issues – I could barely hold myself upright at this point. I explained that I am incredibly sensitive to cross-contamination, so it may have been nothing that they did overtly. (I also ate two pieces of my daughter’s broccoli…which was also on the GF menu, but perhaps hers was not handled the same way as it was not ordered GF – I recalled this part later, but not at the time…brain shut down).

He apologized more and comped all of my food, which I objected to, but he insisted. He was going to have a talk with all cooks, prep workers, and waitstaff about the critical importance of how to handle GF. He was incredible.

I, on the other hand, will now have a big, bloated belly for the next two weeks. And I am headed for a cruise to the Eastern Caribbean on Norwegian Cruise Lines. I usually lose weight on cruises, because all the fruits and veggies I want are available non-stop.

The important point here is that I am learning how I react to gluten and to even the smallest cross-contamination. It’s a journey and one that I am not looking forward to, but every step along the way teaches me how to treat my body right if I want to be here to be a terror to my great-grandbabies (nope, not even a grandmother here—that was not a hint).

Traveling can be challenging for everyone; but when you have systemic issues, traveling can be a nightmare. There is still some debate on whether direct flights or connections are better. Dazlin likes connections because sitting for 5 hours is brutal. K likes direct flights so she only has to board/unboard once and hates the unpredictability of connections.

Below, each of us has listed our best travel tips that work for each of us.

Charis1. Always be prepared for anything- Includes meds for migraines, nausea, etc. 2. Always know your limits- if you can’t stand in the security line- tell them you need the fast line due to a disability, do not let pride get in your way.3. Flights are almost always cold- bring a jacket or pillow- being cold is hard on the joints.4. Know your diet- if the stress of the flight makes you nauseous carry crackers and bland food that is easy on your stomach.5. Dress in clothes that are easy to move in and easy to get through security in. We already move slow- don’t wear tight shoes with belts and a lot of bracelets- you have to remove all of those to go through security.

Dazlin1. At least an hour layover. This means you have forty minutes to grab a snack, use the restroom, etc., and don’t have to run with suitcases. An hour layover means you have 30-40 minutes before boarding.2. The window seat. This is nonnegotiable on long flights. I can’t sit for long in the same position, and I need the window seat so I can contort in whatever way I want.3. Just check the baggage. Just do it. It’s a literal weight lifted from you, mentally and physically.4. DO NOT put your liquids baggie in the same suitcase pocket as your meds baggie (which you should always have on you). I learned this the hard way… Twice. (but do keep in mind that if you have liquid/gel meds, you can carry another liquids bag for meds – just tell security).5. No plans directly after landing… I always fly in at night, so I can just eat and go to sleep upon arrival. I’m not very functional, which means not very happy, after flying. Perk: when you fly at night, the city lights are pretty, especially from your window seat.

KI love to go other places, I just hate having to travel there. I know I will likely enter a flare after (if not during travel).1. Use a quality swivel rolling suitcase (my arms go numb pulling a suitcase behind me).2. Pack food for dietary needs to suffice for the trip, even if going to a conference that should have food (I have celiac’s).3. If I don’t have an elite status that puts me in a shorter line, then I ask for a wheelchair. Standing in long lines is torture.4. Build in recovery time during and after the trip.5. Become a packing ninja. A few neutral pants/skirts with lots of stand-out tops. wear jeans to travel (they take up space). I can get a whole week or more in an overnight bag.

These are the tips that work for us. Unsaid is lots of meds… prophylactically if need be. Hope this helps you!

So, I had plans this weekend. I had a date, and a friend’s birthday party, and hanging out with another friend, and a whole list of Christmas things to get done. Unfortunately for me, it rained all weekend. As soon as I woke up, I could feel it in my bones (specifically, the connective tissue in my ball-and-socket joints). I had to cancel everything. I felt utterly useless, because I was, really.

That happens. That’s life. There is no romantic dancing in the rain, because barometric pressure changes are the enemy. Well, more like Russia is to the Syrian government is to the refugees- the provider and motivator behind mayhem. But I digress.

It happens. Don’t hate yourself. Re-schedule with your friends, or that hot guy who has the cutest dachshund puppy. It’ll be alright, most of the time. If these little take-downs happen and it’s not okay- like during finals, or you take too many days off work- well… Bummer. You can figure it out. Life goes on. I’ve had that happen more than once, and it wasn’t the end of the world, just massively inconvenient.

Sleep through it. Remember to hydrate. The world will still be here when you’re better.

PS- I told everyone I was sick, must be the flu that’s going around.. Sometimes these little white lies are just so much easier, because most people don’t really understand.

I’ve been sleeping on my couch’s pull-out bed for a few days now, and I have never woken up so easily and quickly in the mornings. I wake up before my alarm totally refreshed, alert, and ready to go. It’s insanely weird- I am NOT a morning person, partly because that’s just how I’m wired and partly because of debilitating morning joint pain. But this crummy, awful, cheap, inflexible mattress has been the best thing ever. I don’t know why, maybe the… stuff… I don’t know. But it got me thinking:

You spend an average of maybe 8 hours a night (so like anywhere from 4-12…. it varies) sleeping. So about a third of your life, right? To the average, not-disabled person, mattresses are important. To the person with chronic joint pain/pain of whatever flavor, mattresses are IMPORTANT. A simple change in your mattress can make a huge difference in your life!

And don’t just assume you need some spacey, soft thing- firm mattresses are good for you. I’ve been lusting after a tempurpedic for years, but I swear to you that I’ve gotten the best morning of my life after sleeping on this pull-out bed.

If you’re having chronic trouble getting out of bed in the morning, consider changing your mattress, and don’t get snowed by a salesman- try different things, and most places let you return it after thirty days if it’s not working for you.

In one of my education courses, we learned about “person-first descriptors”. Example: I am not the lupus-woman, I am the woman with lupus. She is not the disabled student, she is a student with a disability. Subtle but significant.

You are not defined by your disability. You’re a kaleidoscope, a butterfly, whatever- you are NOT just your disability. Don’t get mired down in that nonsense. Do not define yourself as “the arthritis girl”, “the always-exhausted lady”, the “disabled guy”. No. You’re the girl who’s in school and crochets and sucks at singing; you’re the guy who’s smart in politics, is a lightweight drinker, and still calls his mom “mommy”.

You are not just your disability. Develop yourself as a human being- I volunteer, babysit, have craft hobbies, travel, foster kittens…

All those motivational speeches at pep rallies still apply, disability be damned. Go out and do stuff.

“So recently, a friend contacted me that a child she knew was diagnosed with psoriatic arthritis – heartbreaking. Given that I have two children (now young adults) who were diagnosed with autoimmune disorders at a young age, she asked if I had any advice.”

So, one of my mom’s friend’s kids was just diagnosed. Everything in my mom’s post is perfect, including yoga being hell and going through the stages of grief and it never, ever going away…. There are good days, but it changes your life, and even more, it changes who you are. I have some advice on top of what my mom has posted:

Have a rest day- mine is Saturday or Sunday. I don’t leave the house. I sleep for a crazy long time. This is important, especially if you have a very active week behind you or ahead of you.

Pay attention during doctor visits! You’re gonna grow up and need to know your medical history, what tests are done and why, and what medications do what. PAY. ATTENTION.

Keep a medical history typed and saved in various places (USB, email, cloud thingy). Keep it updated.

Keep a list of medications and dosages in your phone, to reference during doctor visits. I just took a photo of my bottles and put it in a special photo album folder.

Do not underestimate the value of an hour-long (or more) bath. For reals.

Talk to someone who has what you have, and can share and appreciate your experiences. I didn’t do this until college, and I wish I had done this earlier. Whether it’s an online penpal or someone you meet in your doctor’s office, this helps… You’re not alone.

Be up front with your teachers/professors. Don’t be in denial and try to be “normal”, then crack halfway through the semester. This looks super sketchy. Tell them you need accommodations in the beginning, sign up for them with the disability office (or whatever it’s called where you are), and set yourself up for success.

Best accommodation: typing instead of writing. My hands, finger joints, get all loosey goosey when I’m flared up, and my wrists hurt even when I’m not flared up. I cannot write multiple essay questions or notes during class. The easiest and most effective disability accommodation was being allowed a laptop in all classes for note-taking, and going to the disability office to type tests on a computer (which had the internet disabled… grrr) (jk jk guys, academic dishonesty is not cool).

You won’t always do everything perfectly. You’ll get mad and try to ignore your needs in the quest to “be normal” (pro-tip: everyone is doing this. everyone.). You’ll over exert yourself, get sick, stay up too late, get sick, won’t take your meds, get sick… You get it. What’s important is to know yourself, and know what the consequences of your actions will be so you can weigh your decisions. Should I have stayed up all night? No. BUT I just HAD to finish the third season of Orange is the New Black, and that was worth being a zombie and hurting and having to sleep 10 hours the next night (hey, everyone values their pain differently, don’t judge). When I wanted to drive to Texas with a friend… in winter… in one pull… I knew it wasn’t smart, but I wasn’t going to let that stop me! I packed so many meds my purse sounded like I was carrying some macarenas, and I slept for 12 hours before the drive. Know yourself, know your body, and know how to manage your symptoms so that you can live your life.

Before lupus, I was going to write children’s books and play soccer professionally. Now, I’m going to be a teacher, and I love my life. Your life will change, but that doesn’t mean it can’t still be awesome.

So recently, a friend contacted me that a child she knew was diagnosed with psoriatic arthritis – heartbreaking. Given that I have two children (now young adults) who were diagnosed with autoimmune disorders at a young age, she asked if I had any advice.

Yes. I do have advice.

Caution: my perspective is quite blunt, never medically comprehensive, and comes from my own personal experiences. I don’t know that I ever wondered why me? But if I did, I learned why – to help my kids. My gene pool is apparently a swamp.

My response…

Here is what we learned through my experiences and my girls. In fact, Dazlin might be a good one for her to talk to – she has the severe joint pain and was diagnosed at 13-14 years old. (Charis was diagnosed with lupus at 12, but Dazlin has the more prominent joint pain).

School

let the school know and have them work with her on having two sets of books so she doesn’t have to carry them around. One set at home. one at school. The weight that these kids carry around is atrocious.

The school can also work on where classes are located and provide access to elevators if needed (and give her more time to get between classes, especially on rainy or cold days).

They can give her a quiet place to take tests (this is more important later) so she can shift and move around without disturbing others.

She may also need more time if joints hurt and she is doing intensive writing.

They can also give her someone to write for her for notes and tests.

Work with school nurse to have meds at school.

She may need to alter any required activity, like PE.

She may need to develop an individual education plan with the school so these accommodations are protected.

And the SAT/ACT offer accommodations.

General life

Get a disability placard and learn to pace herself. She may not feel like she needs it, but there will be times she does.

Warm baths in the morning if she can take the time to soak.

Dazlin swears by the sulfasalazine – a med for joint pain. I like voltaren gel.

Eat healthy. including perhaps gluten free or even paleo.

Build exercise into her regimen now – nothing strenuous, but something that keeps the body moving and promotes flexibility. Yoga may not be good, puts a lot of stress on joints.

Maintain a schedule – eat at same time, sleep at same time. the body loves predictability.

If she is going to travel, be alert – window seat so she can slump on side, heat packs, ice packs.

Buy wrist braces, they make some built for women, smaller, gray, I get them at target, but drug stores have them too.

Learn to self-meditate. it helps with frustration and pain. I use breathing and can get down to two per minute within 5 minutes.

And she needs to understand that it is not just joints (as you already mentioned- other body parts are involved).

Conserve energy and learn to pace….this is probably the best way for her or anyone to understand: the story of spoons. Brilliant and correct.

Also, yes, there is no cure, but there is quality of life. Ride this beast until she is old and gray. Have the attitude that it won’t kill me, it’ll just be a pain in the butt until she’s 102.

Mom also needs to understand that they will all go through the stages of grief with this – anger, bargaining, despair – over and over. And they will get tired of it and exhausted from it and it is all part of the package. It affects the mind and emotions and she will both play it up and use it – while she is coming to grips with it. It’s a way of coping and it is real. She will have to learn when to go to doc, when to go to ER, and when they can do nothing for her. Especially in ER, be prepared to face them thinking she is a pain drug seeker. Not so much as a child, but later. And she will have things going on that they will not be able to explain, it will just be her. Meaning nothing will fix it – but she – they all – can learn to cope, physically, mentally, and emotionally.